Coordination of care in breast cancer survivors: an overview.

The number of breast cancer survivors in the United States is increasing. With longer survival, there has been an increase in the complexity and duration of posttreatment care. Multidisciplinary care teams are needed to participate across the broad spectrum of issues that breast cancer survivors face. In this setting, the need for well-established patterns of communication between care providers is increasingly apparent. We have created a multidisciplinary approach to the management of breast cancer survivors to improve communication and education between providers and patients. This approach could be extended to the care and management of survivors of other types of cancer.

Partnership with an African American sorority to enhance participation in cancer genetics research.

BACKGROUND/AIMS: Reduced minority participation in clinical research challenges researchers to consider novel recruitment modalities. This study describes a formal partnership between the National Educational Foundation of the Zeta Phi Beta Sorority and the Mid-Atlantic Cancer Genetics Network. The goal was to enhance awareness about inherited breast cancer and to increase enrollment in the national Cancer Genetics Network. METHODS: In this descriptive, pilot study, two recruitment strategies across four states were undertaken: an onsite educational session at four Annual State Leadership Conferences and a 2-tiered direct mail campaign to the sorority membership. RESULTS: Recruitment methods targeted over 1,200 well-educated African American women. Of the 279 attendees at the state conference educational sessions, only 3 women meeting the high risk eligibility requirement enrolled. Direct mail recruitment elicited 24 eligible women. Lessons learned are described. CONCLUSION: Despite low accrual, the partnership laid a foundation for broader collaboration with the Zeta Phi Beta Sorority. In the future, collaboration with minority sororities and fraternities as part of standard registry recruitment should be explored.

Spiritual issues of family members in a pancreatic cancer chat room.

PURPOSE/OBJECTIVES: To describe spiritual issues addressed by users of a pancreatic cancer informational Web site. DESIGN: Qualitative, descriptive. SETTING: The patient and family chat room of Johns Hopkins Hospital's pancreatic cancer Web site. SAMPLE: 600 postings on the pancreatic cancer Web site. METHODS: Identification of categories and themes in Web postings using the constant comparison method of content analysis. MAIN RESEARCH VARIABLES: Spirituality, relationship of the person posting a message (poster) to the person with cancer. FINDINGS: Relationship of the poster to the person with pancreatic cancer was explicit in 68% (n = 410) of the 600 postings, and 83% of those 410 postings indicated that the poster was a family member. Issues of spirituality appeared in 19% (n = 114) of the 600 postings and addressed four themes: spiritual convergence, reframing suffering, hope, and acceptance of the power of God and eternal life. Six percent of postings were by family members reporting on the death of their loved ones, suggesting that the site also served a bereavement function. CONCLUSIONS: Family members of patients with pancreatic cancer sought and received spiritual comfort in a variety of forms in an Internet-based cancer chat room. IMPLICATIONS FOR NURSING: Nurse developers of cancer information Web sites should periodically assess how the sites are being used and apply the information to the refinement of the sites to better meet user needs. Further study is needed to develop and evaluate cancer Web sites as an evolving medium for providing spiritual support to family members of patients with life-threatening forms of cancer.

The effect of a Frequently Asked Questions module on a pancreatic cancer Web site patient/family chat room.

The Internet provides access to health information and a supportive community with similar illness concerns. Securing accurate information about treatment and prognosis is important to those with pancreatic cancer given its high mortality and short survival. The purpose of this descriptive-comparative study was to determine the effect of a Frequently Asked Questions (FAQ) module on postings in the chat room of a pancreatic cancer Web site. Six hundred postings were analyzed. Three themes were isolated: information seeking, giving, or both; support seeking, giving, or both; and reporting status or death. Information included treatments, nutrition, prognosis, end-of-life care, cost of care, symptoms, and support (social, emotional, spiritual, or physical). A greater proportion of postings sought information after the FAQ module was added, although questions about medical treatment decreased, whereas questions about prognosis and end-of-life care nearly doubled. There was no difference in the proportion of postings addressing support. Medical treatment was the most common treatment reported and pain was the most common symptom reported. This study supported the addition of a FAQ module to a pancreatic cancer Web site and revealed the need for information regarding pain management and care giving at the end of life.

Creating a nursing vision for leadership in genetics.

Today, an increasing number of nurses are applying new genetic knowledge in their practice, research, and educational activities. Just as the evolving precepts of biology, psychology, sociology, medicine, public health, and economics are integral to the practice of quality patient care, so too are those of genomics. The International Society of Nurses in Genetics (ISONG) has taken up the challenge of educating nurses about genetics and about ways such knowledge might be integrated into practice.